Looking deeper than the milestones and seeing God's hand in the inchstones of this life.

Sunday, June 6, 2010

2 for the price of 1

I had a headache last night and only made a short post. It seemed so sad and short so I just saved it for today. Now you 2 in 1!!

Baton Rouge

We are spending the night in Baton Rouge tonight. We left New Orleans this morning and went to the aquarium. Asa really liked the tunnel aquarium but shortly after that he got sick for some reason. I'm not really sure what happened but he spent the rest of the time reclined in the chair and wanting to be rubbed! He didn't throw up but he wasn't feeling good at all. Cade liked the aquarium but he most excited to spend his money in the gift shop! I'm so proud that since he didn't find anything he really liked, he didn't buy anything. At one point he did start grabbing up ALL the post cards just so he could spend his money. Thankfully he put them back. I was proud when he thought of getting a few cause they are really good pictures but he was grabbing up anything!!

We have spent the rest of the day travelling to Baton Rouge. We found our hotel and grabbed a burger before we checked in. It looks like we are calling it a day with cartoons, again!!

Houston

We woke up this morning and had a scrumptious breakfast of poptarts and hotel room coffee! I have a rule about only buying one meal a day. The rest of the time we snack or have the continental breakfast. This hotel had a $9 buffet that I'm sure is great but I can't mess with my food budget! So after our poptarts we headed out for Houston!

There was 2 ways I was going about this. One was straight to Houston, we'd make great time. Or we could go down to the beach and Galveston and look around, longer route but we'd see some sights. Since my driver was up for the sights we headed for the beach! What he didn't fully know was that we'd have to take a ferry across to Galveston! Last year we headed to the aquarium with Anna and the GPS took is a route that involved a ferry! Barry freaked out and by the tie we got to the aquarium it was closed! So the ferry isn't his favorite thing but he sucked it up and we had a great ride! Barry even got Asa out and stood by the rail! I'm stll amazed Asa didn't get sick from the wind or noise and that Barry got near the edge!! I have video on Barry's cell phone though! Asa loved the ferry! He loved the seagulls! He was so happy! I can't figure this kid out!! Of course now I'm thinking a cruise for next vacation would be fun!!

Galveston looked like a lot of fun and we went in a gift shop so Cade could spend his money! Then we headed to Houston! Our room here is great! It has a full kitchen, with supplies! There is a separate living area and a bedroom with 2 double beds. I'm not sure how we'll sleep but I think someone else can have Asa for the night! There is a reason I never slept with my babies! I wake up too easily! For a guy who doesn't move much Asa sure gets around in his sleep!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!

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About Me

I'm a stay at home mom of 4 great kids. I'm married to a wonderful man, provider and father. We thought we had it all figured out until our last little guy came along and taught us better! Being thrown into the medical world of the unknown is scary and only by leaning on God do we make it each day. When things don't go according to our plans, we are comforted in knowing that God has a plan for us all. "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11